Fredericksburg, VA; email@example.com
1954 / Class of '92 / Kappa Light-Chain / SCT, Kidney transplant / Remission / Updated: 9/13
I was diagnosed with Multiple Myeloma (Kappa Light Chain Deposition ) in March 1992, when I was 38 years old. I grew up outside of Detroit, Michigan and later lived in Huntsville, Alabama for about 13 years. Neither place was close to chemicals, just suburbs. My symptom was being overly tired. I went to my gynecologist for a check up and he proceeded to run some tests.
The test showed that I was going into Renal failure. I was sent to a Nephrologist and tested for various thing over a 2 week period. During that 2 weeks I went into complete renal failure and was hospitalized to be put on dialysis. When I was in the hospital I was tested for Myeloma and it came back positive. I did not have any bone involvement but I was left with no renal function. I was started on standard Myeloma chemo and had a severe allergic reaction which hospitalized me for 5 days. Because of the medications having an adverse affect on the already-failing kidneys, it took them a while to come up with an alternative. When they did, my cancer was gone within 6 months. I was still in renal failure and told the only chance of cure was a stem cell transplant. The dilemma was finding a place that would do me in renal failure. We called all over the country and finally found Moffitt Cancer Center in Tampa Florida.
I received my transplant in Sep. 1993. The chemo was Busulfin, VP 16 . Because of the Busi, I permanently lost my hair but that is a small price to pay. The month before the transplant I regained , miraculously, partial kidney function and was pulled off dialysis. My kidneys have improved to almost 50 % at this time (12/99) I am in my 8th year of remission and 7th post transplant. No sign of the myeloma has occurred and I continue to be tested yearly. I am told by all my doctors that I am a miracle. I attribute my life to God, Great doctors, great medicine, prayers and faith. I do council Myeloma patients for Moffitt Cancer.
August, 2001: I will be beginning my 10th Year of remission in October, 2001. I have been getting a lot of patients writing me lately and I so enjoy helping if I can. I have been responding to a lady in France for about 2 months. I have to admit, I get fulfillment by communicating with other patients that I could never get from anything else. I no longer counsel for Moffitt, I guess I have been "out" too long.
July, 2003: Last fall I noticed swelling in my ankles. As I went the rounds with my doctors, it took me 2 months to convince them that it was not normal. By November I had a bone marrow biopsy. It came back inconclusive. Due to the fact that I have Kappa Light Chain, it can be quite hard to detect early on. In January I had a renal biopsy (at my insistence) that proved that the light chains in fact existed. My Bence-Jones proteins are only at 2-3%. Unfortunately, after fighting all winter, my kidneys finally failed again and in May I was put on dialysis. I am doing well though. I am on Thalomid/Dex since March and the kidney proteins have come down from 15,000 to 3,000 in June. I will continue to fight this. I am a full time teacher, so this summer is sort of a break for me to get my medical problems in order and ready to get back to work this fall. I am in contact with several doctors across the country to see what the best treatment option will be.
September, 2003: Count down to 1300. I hope that by the time I go back in December it is 0!!! I am optimistic about my outlook and continue to hope for a miracle again with my kidneys.
July, 2006: In fall of 2003 I was rediagnosed with MM and and consequently went into kidney failure again. In the fall of 2004 I received my second stem cell transplant at Moffitt Cancer Center in Tampa. The cancer is still in remission at this time and I am awaiting a kidney transplant from my sister. I continue to teach and enjoy life. There is hope out there for this disease and every year that goes by , I see more and more new medicines out there for this illness. When I was diagnosed , in 1992, the gold standard was one drug, Melphalan. Now there are many choices and they continue to come out with new ones yearly.
January, 2009: Since I was diagnosed with MM in March of 1992, I am now ending my 17th and entering my 18th year of cancer survival and still going strong! For the past 5 years I had been on dialysis for my renal failure, but in April of 2008 I received an unrelated, incompatible kidney from John Hopkins Medical Center and have been doing great since. I have had no sign of rejection and continue to teach 5th grade. My cancer is still in remission, since 2003 and the 2004 stem cell transplant. Of course, I am heavily monitored for any sign of its reoccurrence, but so far so good.
I heartily welcome communication from anyone out there who has any questions for me. May God bless you all and do not look at this diagnosis as a losing battle. They have made great strides since I was first diagnosed and they continue to discover new treatments.
February, 2012: As of March 2, 2012, it will have been twenty years since my first diagnosis. At that time I was told the average prognosis was 30 months. Hopefully, I give hope to many out there who have been told the same bleak news. I am not saying it has not been a struggle, but it has all been worth it. I have lived to see my children grow up to be fine adults. I have been there for my eldest child's wedding and the birth of my first grandchild. Twenty years ago I was not sure if I would be around to see my babies reach adulthood, much less the birth of a grandchild. I am still in my second remission and my transplanted kidney is doing great. Please know that I would be happy to communicate with anyone who has questions or wants to talk about this devastating disease. May God bless you and your family.
September, 2013: I am in my 22nd year of survival and in the 10 year of my 2nd remission. God is good!!
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